From rare events to systematic data collection: the RESCUED registry for sudden cardiac death in the young in Germany.

Arrhythmia Cardiogenetics Heart Registry Sudden cardiac death (SCD)

Journal

Clinical research in cardiology : official journal of the German Cardiac Society
ISSN: 1861-0692
Titre abrégé: Clin Res Cardiol
Pays: Germany
ID NLM: 101264123

Informations de publication

Date de publication:
15 May 2024
Historique:
received: 14 03 2024
accepted: 06 05 2024
medline: 15 5 2024
pubmed: 15 5 2024
entrez: 15 5 2024
Statut: aheadofprint

Résumé

Approximately one-third of sudden cardiac deaths in the young (SCDY) occur due to a structural cardiac disease. Forty to fifty percent of SCDY cases remain unexplained after autopsy (including microscopic and forensic-toxicological analyses), suggesting arrhythmia syndromes as a possible cause of death. Due to the possible inheritability of these diseases, blood relatives of the deceased may equally be carriers of the causative genetic variations and therefore may have an increased cardiac risk profile. A better understanding of the forensic, clinical, and genetic data might help identify a subset of the general population that is at increased risk of sudden cardiac death. The German registry RESCUED (REgistry for Sudden Cardiac and UnExpected Death) comprises information about SCDY fatalities and clinical and genetic data of both the deceased and their biological relatives. The datasets collected in the RESCUED registry will allow for the identification of leading causes of SCDY in Germany and offer unique possibilities of scientific analyses with the aim of detecting unrecognized trends, risk factors, and clinical warning signs of SCDY. In a pilot phase of 24 months, approximately 180 SCDY cases (< 50 years of age) and 500 family members and clinical patients will be included. RESCUED is the first registry in Germany collecting comprehensive data of SCDY cases and clinical data of the biological relatives reviewed by cardiac experts. RESCUED aims to improve individual risk assessment and public health approaches by directing resources towards early diagnosis and evidence-based, personalized therapy and prevention in affected families. Trial registration number (TRN): DRKS00033543.

Sections du résumé

BACKGROUND BACKGROUND
Approximately one-third of sudden cardiac deaths in the young (SCDY) occur due to a structural cardiac disease. Forty to fifty percent of SCDY cases remain unexplained after autopsy (including microscopic and forensic-toxicological analyses), suggesting arrhythmia syndromes as a possible cause of death. Due to the possible inheritability of these diseases, blood relatives of the deceased may equally be carriers of the causative genetic variations and therefore may have an increased cardiac risk profile. A better understanding of the forensic, clinical, and genetic data might help identify a subset of the general population that is at increased risk of sudden cardiac death.
STUDY DESIGN METHODS
The German registry RESCUED (REgistry for Sudden Cardiac and UnExpected Death) comprises information about SCDY fatalities and clinical and genetic data of both the deceased and their biological relatives. The datasets collected in the RESCUED registry will allow for the identification of leading causes of SCDY in Germany and offer unique possibilities of scientific analyses with the aim of detecting unrecognized trends, risk factors, and clinical warning signs of SCDY. In a pilot phase of 24 months, approximately 180 SCDY cases (< 50 years of age) and 500 family members and clinical patients will be included.
CONCLUSION CONCLUSIONS
RESCUED is the first registry in Germany collecting comprehensive data of SCDY cases and clinical data of the biological relatives reviewed by cardiac experts. RESCUED aims to improve individual risk assessment and public health approaches by directing resources towards early diagnosis and evidence-based, personalized therapy and prevention in affected families. Trial registration number (TRN): DRKS00033543.

Identifiants

DOI: 10.1007/s00392-024-02460-z PMID: 38748206
pubmed: 38748206
doi: 10.1007/s00392-024-02460-z
pii: 10.1007/s00392-024-02460-z
doi:

Types de publication

Journal Article

Langues

eng

Sous-ensembles de citation

IM

Informations de copyright

© 2024. The Author(s).

Références

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Auteurs

Renaldas Barkauskas (R)

Centre for Sudden Cardiac Death and Familial Arrhythmias (CSCD), Institute of Legal Medicine, University Hospital Frankfurt, Goethe-University, Frankfurt/Main, Germany.

Tina Jenewein (T)

Centre for Sudden Cardiac Death and Familial Arrhythmias (CSCD), Institute of Legal Medicine, University Hospital Frankfurt, Goethe-University, Frankfurt/Main, Germany.

Stefanie Scheiper-Welling (S)

Centre for Sudden Cardiac Death and Familial Arrhythmias (CSCD), Institute of Legal Medicine, University Hospital Frankfurt, Goethe-University, Frankfurt/Main, Germany.

Verena Wilmes (V)

Centre for Sudden Cardiac Death and Familial Arrhythmias (CSCD), Institute of Legal Medicine, University Hospital Frankfurt, Goethe-University, Frankfurt/Main, Germany.

Constanze Niess (C)

Department of Forensic Medicine, Institute of Legal Medicine, University Hospital Frankfurt, Goethe-University, Frankfurt/Main, Germany.

Silvana Petzel-Witt (S)

Department of Forensic Toxicology, Institute of Legal Medicine, University Hospital Frankfurt, Goethe-University, Frankfurt/Main, Germany.

Alexandra Reitz (A)

Dr. Senckenberg Institute of Pathology and Human Genetics, University Hospital Frankfurt, Goethe-University, Frankfurt/Main, Germany.

Elise Gradhand (E)

Dr. Senckenberg Institute of Pathology and Human Genetics, University Hospital Frankfurt, Goethe-University, Frankfurt/Main, Germany.

Anastasia Falagkari (A)

Department of Internal Medicine and Cardiology, University Heart Center, University Hospital Frankfurt, Goethe-University, Frankfurt/Main, Germany.

Maria Papathanasiou (M)

Department of Internal Medicine and Cardiology, University Heart Center, University Hospital Frankfurt, Goethe-University, Frankfurt/Main, Germany.

Reza Wakili (R)

DZHK (German Centre for Cardiovascular Research), Partner Site Rhein-Main, Frankfurt, Germany.
Department of Internal Medicine and Cardiology, University Heart Center, University Hospital Frankfurt, Goethe-University, Frankfurt/Main, Germany.

David M Leistner (DM)

DZHK (German Centre for Cardiovascular Research), Partner Site Rhein-Main, Frankfurt, Germany.
Department of Internal Medicine and Cardiology, University Heart Center, University Hospital Frankfurt, Goethe-University, Frankfurt/Main, Germany.

Jessica Vasseur (J)

Institute of Medical Informatics, University Hospital Frankfurt, Goethe-University, Frankfurt/Main, Germany.

Jens Göbel (J)

Institute of Medical Informatics, University Hospital Frankfurt, Goethe-University, Frankfurt/Main, Germany.

Holger Storf (H)

Institute of Medical Informatics, University Hospital Frankfurt, Goethe-University, Frankfurt/Main, Germany.

Stefan W Toennes (SW)

Department of Forensic Toxicology, Institute of Legal Medicine, University Hospital Frankfurt, Goethe-University, Frankfurt/Main, Germany.

Matthias Kettner (M)

Department of Forensic Medicine, Institute of Legal Medicine, University Hospital Frankfurt, Goethe-University, Frankfurt/Main, Germany.

Marcel A Verhoff (MA)

Centre for Sudden Cardiac Death and Familial Arrhythmias (CSCD), Institute of Legal Medicine, University Hospital Frankfurt, Goethe-University, Frankfurt/Main, Germany.
Department of Forensic Medicine, Institute of Legal Medicine, University Hospital Frankfurt, Goethe-University, Frankfurt/Main, Germany.
Department of Forensic Toxicology, Institute of Legal Medicine, University Hospital Frankfurt, Goethe-University, Frankfurt/Main, Germany.

Britt-Maria Beckmann (BM)

Centre for Sudden Cardiac Death and Familial Arrhythmias (CSCD), Institute of Legal Medicine, University Hospital Frankfurt, Goethe-University, Frankfurt/Main, Germany.

Silke Kauferstein (S)

Centre for Sudden Cardiac Death and Familial Arrhythmias (CSCD), Institute of Legal Medicine, University Hospital Frankfurt, Goethe-University, Frankfurt/Main, Germany.

Eva Corvest (E)

Centre for Sudden Cardiac Death and Familial Arrhythmias (CSCD), Institute of Legal Medicine, University Hospital Frankfurt, Goethe-University, Frankfurt/Main, Germany. corvest@med.uni-frankfurt.de.
ORCID: 0000-0001-9792-8419

Classifications MeSH